Tag Archive | Chiari Malformation

Little moments

In our lives we all have those little moments (small encounters) when you walk away smiling and thankful for the experience. I recently had such a time. My family and I had gone to the movies, and when it was over, it was time for a much-needed bathroom break. Of course, there was a line after all it was the womens’ bathroom. While waiting in line there were two young girls and their mother. One of the girls looked to be about 5 and her sister was a bit older. The younger girl said to her mother in a not so quiet voice, “what is wrong with her? Why can’t she walk and stand?” The mother looked mortified and attempted to quiet her daughter. I turned, smiled, and explained to the girl that I have a spinal cord injury but in terms she would understand. I said, “I have an owie inside my back.  It makes it hard for my brain (pointing to my head) to tell my legs what to do. My signals get mixed up.” She then asked, “We you born this way?” I told her, “told her no, my back got really sick about two years ago and I had to have special surgeries to my back. One of the surgeries made me brain and my legs stop talking to each other like hers do.” I also explained that I use my walker to help me get around and it helps me to keep from falling because I lose my balance frequently. As I finished washing my hands I turned to the mother and girls and said, “Thank you for asking questions. I love questions. “

This small encounter was a blessing. Often people just stare or stare and point. I can tell that they have questions and are guessing as to why I am in the state I am. I only wish more people were like the younger children who ask or at least speak out loud and say things like, “what is wrong with her? Or “how come she can’t walk?” Young children often have no filter and are curious. They don’t worry about or intend to be hurtful. So, why should I get upset by their comments or questions?  Instead I view them as a blessing. It is another opportunity to help educate others about my conditions and show them that being different is not a curse.  

I believe these little encounters are little nudges from God. He brings people into our life for different reasons and for different amounts of time. Some are brief and others for long periods of time. But weather brief or not I don’t want to miss the opportunities (blessings) that I am given.

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Not ready to quit

Having hope and believing that God is healing me has continued to give me the courage and strength to continue moving forward. My hard work of going to the gym and working with a trainer at least twice a week, continuing to stretch and crawl as much as possible, and recently adding in the use of the Bioness L300 Go system are paying off . My walking and balance have improved! I am hopeful that I will eventually be able to walk device free again. I have also recently begun to get more feeling in my right leg. Six months ago, my right leg was mostly numb only having feeling in the ankle and behind the knee. I am beginning to have intermittent feeing at the back of my thigh and along the inner and out areas of my leg.

This was 6 months ago in June. My walking is clunky and stiff. It was difficult to control my especially if I wasn’t looking at them.

This was yesterday morning. My walking is still stiff, but it is smoother. My knees don’t snap as often. I also can walk without looking down at my feet all the time. God is good and He is helping me get through day by day. I refuse to give up. I will dance freely again!

Back to using the Bioness L300 Go

I have been unable to use my Bioness L300 Go system for the last two weeks due to the unexplained swelling and pain I had in my right leg. The doctor believed that it was a vein in my leg ruptured which caused the swelling and bruising. So, I took a break from using my devices, but now I am back to using them gradually. I am hopeful that overtime I will improve and graduate from having to use any assistive devices because it is believed that over time new nerve pathways are created. This means more communication from my legs to my brain. This will help improve my proprioception which will improve my balance and feeling in my legs.

I am walking on an incline. My walking continues to be jerky, but with lots of prayer, time, hard work, and going back to Pt for gait training my walking will improve. I am blessed to even be able to stand and walk. I will never take my legs for granted again.